Speech Pathology Australia s submission to Australian Government s Department of Health
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1 Level William St T office@speechpathologyaustralia.org.au Melbourne Victoria 3000 F Speech Pathology Australia s submission to Australian Government s Department of Health Electronic Health Records and Healthcare Identifiers: Legislation Discussion Paper 24 June 2015 The Speech Pathology Association of Australia Limited ABN
2 Speech Pathology Australia s submission to the Electronic Health Records and Healthcare Identifiers: Legislation Discussion Paper Introduction Speech Pathology Australia is the national peak body for speech pathologists in Australia, representing more than 6300 members. Speech pathologists are the university trained allied health practitioners who specialise in treating communication and swallowing difficulties (dysphagia). Communication and swallowing difficulties can arise from a range of conditions that may be present from birth (e.g., cerebral palsy, cleft palate or Autism Spectrum Disorder), emerge during early childhood (e.g., stuttering, severe speech sound disorder), or during adult years (e.g., traumatic brain injury, stroke, head/neck cancers, neurodegenerative disorders such as motor neurone disease) or be present in the elderly (e.g., dementia, Alzheimer s disease, Parkinson s disease). Communication disorders encompass difficulties with speech (producing spoken language), understanding or using language, voice, fluency (stuttering), and pragmatics (the social use of language), or a combination of areas and can have a significant impact on a patient s quality of life, mental health and capacity to participate in civic life (employment, education etc.). Swallowing disorders affect the ability to safely swallow food or liquids and can lead to medical complications including malnutrition, choking, chest infections/pneumonia and death. Patients with communication and swallowing difficulties (from whatever underlying medical or developmental cause) often require ongoing, multidisciplinary health care. In many circumstances, the nature of their complex and chronic conditions means that this health care is provided across multiple levels of the health system (acute hospital, rehabilitation through to community or primary based care) and across multiple health providers (e.g., medical specialists, general practitioners, nurses and allied health). For example, a patient post-stroke may require care from a doctor, nurse, physiotherapist, occupational therapist and speech pathologist on an ongoing basis even after they leave hospital. There are an estimated 1.1 million Australians who have a communication disorder and one million Australians who have swallowing difficulties. This is comparable with the number of people with diabetes and three times the number of those with dementia. In 2014, recognition of the prevalence of these conditions, a federal inquiry by the Senate Community Affairs References Committee into the prevalence of speech, language and communication disorders and speech pathology services in Australia was undertaken. The final (and bipartisan) report from the Committee recommended a range of improvements that should be made to improve the health and wellbeing outcomes for Australians with communication and swallowing difficulties. A response from the Australian Government to the Senate has not been tabled at the time of writing. Speech Pathology Australia welcomes the opportunity to provide feedback on the Australian Government s Department of Health Electronic Health Records and Healthcare Identifiers: Legislation Discussion Paper. We believe the introduction of the electronic health record system can improve outcomes for patients by reducing duplication, improving coordination of care, improving health practitioner efficiencies and by enabling greater health literacy and self-management by consumers. The proposed changes to the legislative framework that underpins the electronic health record and the associated trials of these changes offer an opportunity to remedy many of the systemic problems that have plagued the implementation of the system. In particular, we think it is a critical opportunity to transform the system from a mymedical focus to a more comprehensive myhealth approach ensuring that the wider range of health practitioners (including the over 100,000 allied health practitioners) and overall health needs of consumers are recognised and built into the architecture of the system. Whilst it is recognised that the Discussion Paper seeks specific feedback on the legislative changes these legislative underpinnings should not be divorced from considerations of how the system will be implemented in practice. This is particularly important in relation to the design of the trials. Our submission includes some background information about the experiences of speech pathologists and the ehealth record system to date, specific feedback regarding the legislative proposals that would better support the implementation and use of the My Health Record system and recommendations that we hope will be considered pragmatic and constructive when finalising the legislative changes. Page 2 of 7
3 About Speech Pathology Australia Speech Pathology Australia is the peak professional body representing speech pathologists in Australia dating back to At present, Speech Pathology Australia provides professional support services to in excess of 6300 speech pathologists in Australia. This is estimated to cover per cent of all practising speech pathologists in Australia. Speech Pathology Australia is governed by a Board of Directors at the national level with branch committees operating at state and territory levels. In addition, there are a range of special interest groups supported by Speech Pathology Australia in relation to specific areas of practice or clinical interests. To date speech pathology is not an included profession in the National Registration and Accreditation Scheme (NRAS). In the absence of national registration, Speech Pathology Australia maintains robust self-regulation of its members and alongside certain other non-registered allied health associates has progressed work in establishing the National Alliance of Self-Regulating Health Professions (NASRHP) to facilitate the development of a National Framework for Self-Regulation for Health Professionals. Where possible, this national framework mirrors that required by NRAS in relation to monitoring and systematic self-regulation mechanisms for quality and safety in the delivery of health care by these professions. This framework augments the existing operations of Speech Pathology Australia in relation to developing and maintaining the clinical, educational and ethical standards that promote high quality and safe speech pathology care. The Certified Practising Speech Pathology (CPSP) program is the foundation of speech pathology as a self-regulated health profession. The CPSP credential is recognised by funding programs such as Medicare, the Department of Veteran Affairs and private health funds so that patients can access rebates for payments for evidenced based speech pathology services. Speech pathologists provide health services in the acute care (hospital), sub-acute care, rehabilitation and primary care sector (including community health and general practice) as well as within other sectors such as disability, residential and community based aged care, education, juvenile justice and community settings. We work across public and privately funded services. In recent years, there has been a significant shift in service delivery from previously majority government funded positions to the private sector. In 2011, Australian Bureau of Statistics data indicated that 57.1 per cent of speech pathologists are now working in private practice 1. This is supported by more recent information from Speech Pathology Australia s membership demographics indicating a further retraction of the public funded speech pathology workforce. In 2015, over two thirds of Speech Pathology Australia members work (at least some of their working time) within private practices. This has considerable implications for the uptake and implementation of the ehealth record system by speech pathologists working in private, small businesses, who form strong liaison and referral relationships with general practitioners, medical specialists and other health professionals. About speech pathologists and the ehealth record system Speech Pathology Australia is supportive of the need for, and the ongoing implementation of, a national ehealth record system. The integration of health information is especially important for the many patients that speech pathologists work with who have complex and chronic conditions that require ongoing support from a range of health professionals (e.g., ENT specialists, paediatrician, geriatrician, rehabilitation specialist, psychologist, oncologist, occupational therapist, nurse, pharmacist and general practitioner). Despite their willingness to be involved in the ehealth record system speech pathologists in Australia continue to report significant barriers that are limiting, or preventing, them from becoming involved in and using the ehealth record system. The proposed trials of the legislative changes to the My Health Record system provide an opportunity to minimise these barriers for speech pathologists and the patients who require their services. 1. Consumer information about the My Health System should be appropriate for patients with communication impairments 1 Health Workforce Australia (2014) Australia s Health Workforce Series: Speech Pathologists In Focus. July. HWA Page 3 of 7
4 Individuals with communication impairments require modified approaches and/or additional support to understand and access the My Health Record system. Many of these patients will benefit from information being presented in Easy English, with the availability of multiple approaches to communicating information (e.g., sign interpreter; alternative or augmented communication). Communication accessible information for patients is critical to ensure that health practitioners are supported to explain to the My Health Record to patients including their rights to opt-out and to decide what information they do not wish to be included. Speech Pathology Australia is willing to work with patients with communication impairments, relevant consumer groups and the Department of Health, to support the development of communication accessible information and resources to support the changes to the My Health Record system. 2. Speech pathologists should be able to upload clinical information to the My Health Record Currently speech pathologists are unable to read all and upload clinical information to the ehealth record. Our members report that quality and safety of care and patient outcomes would be improved if speech pathologists were able to share information via the My Health Record with other health professionals. For example, it is critical that the outcomes of a swallowing assessment by a speech pathologist that indicate an inability or risk in swallowing tablets be available to the patient s general practitioner and pharmacist so as to ensure that medication is dispensed in an appropriate format to reduce medication misadventure. The current situation where speech pathologists are able to only view the information in the record but are unable to add clinical information to the ehealth record discourages them from engaging with the ehealth record system. 3. Speech pathologists should be supported with IT infrastructure and compatible clinical software to enable engagement with the My Health Record system. Many speech pathologists work as sole practitioners or in small group practices. They have limited funds to purchase IT infrastructure and many of them continue to use paper based record keeping systems. Some of the larger practices have, or are willing to purchase, clinical management software, such HealthKit, Cliniko or My Practice. However, there are no software programs currently available to private practice speech pathologists (or other allied health) that are compatible with the electronic health record system. The majority of speech pathologists do not have secure messaging software but continue to rely on mail, and/or faxing of information between hospitals, specialists, general practitioners and other allied health professionals. The current situation where speech pathologists are unable to fully engage with the ehealth record system (unable to add clinical information) acts as a disincentive for speech pathologist to consider the purchase of IT infrastructure and practice management software to support involvement in the My Health Record System. The trials of the opt-out My Health Record proposed under the legislation changes provide a timely opportunity to scope the IT infrastructure needs of the non-medical health workforce to fully engage with, and effectively use the revised My Health Record System. Whilst dedicated funding support for IT infrastructure would be ideal, many speech pathologists have indicated that appropriate access to the My Health Record would in itself act as an incentive to participate and upgrade IT infrastructure for practitioners; this would create increased demand for software suppliers to adapt their products for allied health. Page 4 of 7
5 Comments on the Legislative Proposals Speech Pathology Australia makes the following comments on specific aspects of the proposed changes to the legislation governing the My Health Record system in Australia Name of the PCEHR system Speech Pathology Australia supports the proposal that the PCEHR be renamed the My Health Record Definitions Speech Pathology Australia supports the proposed changes to the definitions to align them more closely with those in the Privacy Act. However, there is some concern that the proposal to amend the definition of health care in both the HI Act and the CEHR act to (c) Allow regulations to be made to exclude activities from being healthcare because they are performed for reasons other than care or treatment would in the current wording also exclude preventative health care activities. The definition of healthcare activities should include prevention. This is especially relevant in relation to chronic disease where prevention is an important part of the work that allied health professionals undertake Establishment of ACeH Speech Pathology Australia supports the establishment of the Australian Commission for Electronic Health (ACeH). There are a number of speech pathologists, and other allied health professionals, with expert knowledge and skills in the area of ehealth. In order to ensure that the My Health Record system acts as an electronic repository of health and not just medical information about a patient, it is critical that the new governance arrangements reflect the range of health practitioners involved in the provision of health care to Australian patients. Thus, it is recommended that ACeH governance include speech pathologists (and/or other allied health practitioners) on the ACeH Board and ehealth advisory committees An opt-out PCEHR system Speech Pathology Australia supports the principal of an opt-out My Health Record system. It is prudent to trial the opt-out participation model and the trial provides an opportunity to remedy many of the implementation problems plaguing previous incarnations of the system. To ensure the My Health Record reflects a comprehensive approach to health care (and not just medical care) it is recommended that speech pathologists (and other allied health) are involved in the planning and implementation of the opt-out participation model trials. Speech Pathology Australia supports patients having the option to opt-out of having an ehealth record and the continuation of existing arrangements whereby individual patients can decide what information is going to be available and to whom. However, in some circumstances the withholding of clinical information may impact negatively on the quality and safety of the care being provided to the patient. It is recommended that there be a mechanism built into the My Health Record to alert practitioners that they are viewing an incomplete or abridged clinical record. The existence of a My Health Record should not negate clinical responsibility in appropriate and accurate history taking and care planning and to support this speech pathologists (and other clinical staff) may need to know if there is critical information missing from the My Health Record. Speech Pathology Australia encourages the participation of speech pathologists in the My Health Record system on an opt-in basis. Education and training and provision of incentives will be an important way to support speech pathologists (and any other health practitioner) to use the My Health Record system. Page 5 of 7
6 These mechanisms will need to be made available to all practitioners not just healthcare provider organisations as is currently outlined in the legislation paper Obligations to use PCEHR system As proposed, if speech pathologists are to be required to upload data to the My Health Record in order for their patients to be eligible for Medicare rebates for their services, then speech pathologists will need to be financially compensated for the additional workload involved Collection, use and disclosure of information Speech Pathology Australia agrees with the proposed move to a principles based approach to clarifying the obligations of entities in regard to the collection, use and disclosure of information. Speech Pathology Australia supports gaining consent from individual healthcare practitioners to have their details listed in the Healthcare Provider Director (HPD). It is important to note that some speech pathologists only provide a mobile service (where, for example, health care is provided in the home of the patient or an aged care facility). Currently these speech pathologists provide their home address as their business address. It will be desirable to provide the opportunity for these practitioners to have their name and phone number listed on the HPD but their address withheld from publication. The speech pathology profession is not part of the National Regulation and Accreditation Scheme (NRAS) as indicated previously. As such, speech pathologists are not registered with AHPRA. To obtain an individual healthcare identifier, individual speech pathologists need to apply to Medicare. Speech Pathology Australia would be willing to discuss with the Department an avenue where the Association provided a role similar to that of AHPRA to provide speech pathologists with an individual healthcare identifier. With the majority of speech pathologists working in Australia already members of Speech Pathology Australia, this could improve adoption and encourage uptake of the My Health Record by the profession. Page 6 of 7
7 Recommendations Speech Pathology Australia welcomes the opportunity to provide comment on the Australian Government s Department of Health Electronic Health Records and Healthcare Identifiers: Legislation Discussion Paper. Speech Pathology Australia recommends: 1. That the Personally Controlled Electronic Controlled Health Record be renamed the My Health Record as proposed. 2. That the proposed changes to the definitions of health care in the PCEHR Act and HI Act to align them more closely with those in the Privacy Act be enacted as proposed with the addition of clarification that heath care includes preventative health care activities also. 3. That an Australian Commission for Electronic Health (ACeH) be established as proposed. 4. That ACeH include speech pathologists and other allied health practitioners in the governance structures (board and or advisory committees). 5. That trials be undertaken as proposed for the opt-out My Health Record system. 6. That speech pathologists (and other allied health practitioners) are involved in the planning and implementation of the opt-out My Health Record trials. 7. That the trials of the My Health Record be designed to include: a. Consumer information about the My Health System in appropriate formats for patients with communication impairments b. Speech pathologists and other allied health practitioners are able to read and upload information to the My Health Record c. Specific work be undertaken to determine the IT infrastructure needed to ensure the My Health Record is able to be used by all health practitioners involved in a patient s care. d. That a mechanism is built into the My Health Record to alert practitioners that they are viewing an incomplete or abridged clinical record (in the circumstances where a patient does not want specific clinical information included). 8. That a principles based approach to clarifying the obligations of entities in regard to the collection, use and disclosure of information be used, as proposed. 9. That, as proposed, individual healthcare practitioners are required to provide explicit consent to have their details listed in the Healthcare Provider Director (HPD) and that those who wish to be included in the HPD but do not want their home address to be displayed can indicate this when consenting for their details to be added to the HPD. 10. That the Department explore with Speech Pathology Australia how SPA can perform a function similar to that of AHPRA to provide speech pathologists with an individual healthcare identifier. If Speech Pathology Australia can assist in any other way or provide additional information please contact Christine Lyons on or by ing clyons@speechpathologyaustralia.org.au. Page 7 of 7
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